Opening the Door

I had accepted Merv wasn't going to leave his room in a hurry.  He had lived in his small room with adjacent bathroom since November 12th.  Huntington's Disease messes with your mind as it destroys the brain.
Merv was previously an outgoing person, not one to stay at home and watch TV all day.  Now he spends most of the day listening to Foxtel 70's hits.  I know most of the songs as they are constantly repeated.  I know songs from the 70's I had never heard of before.  There is definitely a collection of one hit wonders among the song lists.
Merv's care facility did what everybody else is doing at this time of the year.  They're celebrating Christmas with concerts, dinners, celebrations and the expected decorations including trees with flashing lights!
I had snapped some photos of our local shopping centre's decorations.  Amazing photos which I was happy to share with him.  Last Friday I told him the care facility had some amazing decorations to see.  I suggested we take him to see them.   I could see him turning the scenario over in his mind.  A few hours later I asked the same question and again after lunch when his support worker arrived.
Hooray!  He said he was go!
The spell was broken after three weeks and four days Merv was in his wheelchair once again leaving his room and into the corridor.  He loved the decorations, he thought time to look and to feel.  Like a young child exploring a new world.  After the enjoyment of colours and lights his support worker took him to the concert in the clubhouse.  No jerky movements or frustration from him at all, he enjoyed every moment.
I was thrilled; yes I was thrilled.  There is hope we can do it all again on Christmas Day.

Sister Love

Merv hasn't seen his sister Vicki for over twelve months.  I don't know if he thinks of her but I do know he wanted to see her.  Just a few weeks back I received a call from the manager of the care facility where she lives.  Her enthusiasm was exciting.  She said Vicki was going on a weekend getaway with two carers and her plans included visiting Merv in his care facility.
Merv hasn't been out of room for weeks, he is so comfortable there and too uncomfortable to go elsewhere.  Myself and his carer hoaxed him into his wheelchair a few days before Vicki's visit.  We took him to the cafe area, enjoyed a short walk outside and a round or two of cards.
There was hope Merv would enjoy lunch with his sister in the cafe area a few days later.  The day arrived but nothing would budge him.  "No, No, No." was his answer.
Mel accompanied me to the care facility that morning, she was looking forward to see her Aunty.
Where there is Plan A there is always room for Plan B.  We threw Plan A out the window and brought Vicki and her carers to see Merv in his room.  She shrieked with joy as he appeared in her vision.  He grinned back.  It was lovely to see.  Lunch was soon served and once again they were apart.  With lunch in the cafe area finished and everyone fed our chatting brought bonding between us all.
Plan B back in action with us pushing Vicki back to Merv's room.  Vicki's carers are just young girls but they did something I had not thought of.  They put Vicki's chair next to Merv's and encouraged them to hold hands which they did and then they left the room for a few minutes to give them their own space.  They didn't talk to one another.  Communication is difficult for both of them; they simply sat in the quiet holding hands.  It was a precious time.
Vicki's carers were so touched they promised to bring her back the next day which they did.  Merv and his sister ate lunch together in his room and they held hands once again.  I don't know how long it will before they see each other again.  I'm glad it was such a lovely time for them both.

Not on the Cards

It's been a tough month.  The second time in as many months I have flown the coup enjoying a few days away.  Merv has not been neglected.  His community support workers have kept him company and comfortable.
As Merv's health continues to decline he continues to lose weight with his personal needs forever increasing. At times I am running to keep up with his needs.
The community support workers read my daily notes and add their comments in the communication book.  I noted recently there was no comment on Merv's delight in beating everyone who dares to play him at UNO.  How he loves the game of UNO.  He has played for too many years to remember.  His sly smile when the workers state his delight in meddling bordering on cheating.  Cheating?  Merv?  Absolutely!
I asked the workers and they gave me different answers.  One of them said he was too tired, the other said they hadn't had time.
I asked Merv instead.  He said it was difficult to hold the card holder.  I suggested I velcro the card holder to the tray table in front of him allowing him to be hands free.  He just said, "no, he didn't want to play anymore."
I sat and cried.  What will he give up next?  There's not a lot left to give up.

A Banana Case

Like ants in their nest or bees in a swarm there are times when life gets out of kilter and nothing seems quite right.
One minute Merv in his care facility is going along as expected.  Staff are coming and going and Merv is doing as well as expected considering his HD.  Life is not what we had hoped but it is what it is.
Merv had his fall over three weeks ago, his foot still hurts, the gash on his head has healed and left a small scar.  I was feed up and emailed the deputy manager asking him to address some crucial questions concerning Merv's care.
Nothing much happened until a week later when a hive of activity began.  Staff wanted to know absolutely everything Merv was eating and drinking.   Records were being kept.  Merv has lost over 8 kilos since March.  Suddenly they appeared to be concerned.  This is not completely true, staff have been concerned adding a sustenance powder to his mealtime potato.  There has also been the occasional pudding supplement.
The Allied Health Team was contacted.  I thought of closing Merv's door (pity there is no lock) just to keep the hordes out.
Today's incident keeps replaying in my mind.  An unexpected incident; after filling up my coffee mug I returned to Merv's room to find the nurse chatting quietly to him.  She sat next to him saying he had lost a lot of weight and would he consider eating a banana later on for supper.  He had yet to have his lunch.  He mumbled he would.
The nurse came back with a large yellow banana and placed it on his tray in front of him.  She must have seen the expression on my face and asked if he could peel it and eat it like it was.
I didn't even bother to tell her Merv has dysphasia, surely she would know?  I suggested the banana should be mashed and mixed with either custard or yoghurt.  "Oh," she said as she retrieved the banana exiting the room.  We didn't see the banana again (or the nurse).
I have a meeting with the deputy manager on Thursday along with the Allied Health Team.  It promises to be interesting.

Within A Month

It's been a busy month.  Merv fell out of his chair almost three weeks ago gashing the right side of his head and rolling on his right foot.  He has an expected broken bone or two in his foot.  I spent most of the morning crying.  I had arrived late only to find the nurse stating she had contacted me.  I challenged her on this.  My new iPhone records all ingoing and outgoing calls; there was no evidence of her call. It was three hours after his fall he told me his foot hurt.  I removed his shoe and sock to find his foot swollen like a melon.  The staff had checked him for further injury  More tears.  It was a frightful day.  His head wound has almost healed completely but his foot is still a bug-bear for him.  He is having panadol daily.
Merv fell out of his chair due to his excessive movement increasing almost daily.  A month later he is on all sorts of drugs.  He defies the odds by continuing to surprise us with bouts of excessive movements.
Just by talking to those in the know I learnt in the last month people with HD become easily overwhelmed outside their comfort zone.
Merv who not so long ago enjoyed nothing better than a big crowd of people, lots of noise and taking his time has turned the tables by reversing all of the above.
I'm getting to know and understand a little better this other personality of Merv's.  I'm trying and it is very trying.    

       

HD Hindsight

It seemed profound at the time but in hindsight it's just commonsense.  On Tuesday I like to go to the gym before seeing Merv at 10am but the deputy manager invited a Huntington's advisor to Merv's care facility.
I was asked to join the meeting along with the clinical nurse.  There was the regular questions of medication and symptoms.  Then we discussed HD behaviours.  I should have known, I should have figured it out myself.  Someone should have let me know.
During our round table discussion I explained some of Merv's new behaviours.  Like his behaviour at the dining table at lunchtime.  He is happy to eat his lunch getting at least a couple of mouthfuls on his adult bib.  When he has finished his main meal and dessert he shouts out, 'FINISHED.'  I thought it was just bad behaviour but I was wrong.  It was explained that Merv will often feel he is out of his comfort zone and becomes disorientated.  Where had my Merv of all these years gone?  Who is this man who holds my hand, lets me feed him and is overwhelmed by too much noise and movement.
In hindsight I really should have known.

Cruising together in 2008

2 Crashes Post Father's Day

Two crashes in the family post Father's Day.  At least Father's Day was a memorable occasion. Today we had one car crash plus one wheelchair, but firstly more about Father's Day.
Every September the first Sunday is Father's Day in Australia.  Last year we went to a local tavern and celebrated.  I think back and know there are no more restaurant lunches to share with Merv.
This year we celebrated with lunch at the Care facility.  Dustin and Grace arrived at midday and I was on my way.
A strange beginning for our celebration day.  Merv was just brilliant, not a twitter or a jerk to be seen.  He really is a Jekyll and Hyde at times.  Good today and goodness knows what tomorrow will bring.
After present giving earlier in the day Mel stayed behind to watch Crocodile Dundee with her Dad while I was at home putting the finishing touches to lunch.  Merv was going to have his regular pureed lunch but followed with yummy home made cheesecake.
I was putting together pulled pork rolls for lunch.  It seemed simple.  I bought the pulled pork but didn't read the instructions until I was almost packed and out the door.  Oh goodness, I had to either put it in the oven, on the stovetop or microwave.  Definitely not the microwave and my oven is super slow.  I grabbed the frypan, heated up the oil and threw in the pork (after reading the instructions twice), it was already cooked just needed heating to allow the pork to be 'pulled.'  All done.  I had made the balsamic sauce the previous night, the coleslaw that morning and sliced the radish. I then added home grown lettuce as I remembered Dustin is not keen on coleslaw.  I packed the home made potato chips for the dips, cut up fresh fruit and a big pack of chocolate balls.  There were upteen plates, dishes and utensils to be packed.  Oh don't forget the cheesecake please.  Yes all the food was  packed in the wheeled esky and a bottle of leftover but unopened Ikea apple juice plus two thermos, cups and coffee sachets.
One oversized esky on wheels and three bags later I'm ready to leave but I almost leave the esky in the kitchen.  I grab it as well as the bag with the Bingo game.
Fortunately Dustin and Grace have already arrived and help me out with the in-house picnic bags.  The cafe area at the care facility is filled with an extended family taking up all the tables except one.  We place our stuff on it and wrangle a couple of chairs.  Dustin and Mel go and get their father and bring him down in his wheelchair.  The extended family is now smaller in number and we are offered more chairs.
It's no restaurant but I put out all the ingredients for the pulled pork buns and we all help ourselves, pour coffee and eat chocolates while I feed Merv his lunch.  It is just lovely.  Later I cut up the cheesecake which has survived two weeks in the freezer.  It's still yummy.  Merv delights in two portions. The Ikea juice is consumed and the Bingo bag is found.
Mel takes on the job of spinning the wheel and calling out the numbers.  Merv and I share two cards and Merv wins the first game.  Dustin is the spinner next and Grace wins.  We pack up and head back to Merv's room.
It has been a fabulous afternoon.
That was yesterday and just after 9am I received a call from the care facility's nurse.  Merv had woken well only to become agitated and thrashing in his wheelchair after breakfast.  The carer had left him for a minute and returned after hearing a loud thud.  His wheelchair which weighs almost 50kg was on its back with Merv still strapped in it.  The staff used a hoist to lift him out.  I was heartbroken and I thankful I wasn't there to see it.  Extra meds were given to him and by the time I had rushed down he was relaxed sprawled out in his recliner chair.
Dustin rang me after 6pm and said he had a minor car accident in a roundabout.  Neither he nor the other driver were hurt but both cars need repairs.  Fortunately it wasn't his fault.
We have made it to the end of the day.  At least everyone is accounted for and well.  Another day awaits us.

Merv recovered after his fall today